Anyone ever see the movie Dragonheart? The one with Dennis Quaid? Pretty solid movie, really. I'll get to why I'm asking in a moment The movie is about a young king who was stabbed in the heart as a young man. In order to save his life, a noble dragon played by Sean Connery, gives the young king half of his heart so that he would live. Over the years, the young king grew into a vicious tyrant. Blaming the dragon for the king's turn to evil, Quaid's character, Bowen, vows to rid the world of dragons by slaying every one he encounters. I'll get back to why I mentioned this later. I promise.
In early September, I started having more breathing issues. Around 2-3am, I would wake up from a sound sleep, unable to catch my breath. As long as I sat up, I could catch my breath and all would be fine again. This went on and off for a week or so when I decided to involve my doctors. After a few days of testing, an echo-cardiogram revealed heart failure. Don't worry...I'm just fine...wouldn't be making you read a blog post if I wasn't...but it was a heavy concern for us. For someone who's only 36, how does this happen? And the answer is...we don't know. And may never know. Our primary suspects are radiation and chemotherapy. We've read that just those 2 things combined can a have a delayed effect on certain people. Specifically, their hearts. Unfortunately, there's just not enough history or data to back this up. But that's my doctor's theory.
So, what did we do? And that answer was easy, at least coming from my doctors: we'll just add more drugs to the regimen. Awesome. They put me on a few low blood pressure drugs, a diuretic, and aspirin. They also put me on a low sodium diet, limited to 1500mg of sodium per day. Talk about rough for a guy who's always eating because of my steroids anyway. It hasn't been easy, but my breathing at night has been much better and I'm returning to normal. Whatever that is. I'm constantly redefining what's normal anymore.
I'm grateful to have survived an awful disease. I'm grateful for the care that has been given to me. But there are days when I feel very much like Bowen. In that, certain things have happened, that I can't change, and I need to place that anger and blame somewhere; That the world and my doctors are fumbling for solutions because my situation is unique compared to some; That I feel like a guinea pig for them to poke and experiment on. And I can't seem to catch a break sometimes with these drug additions. Good gawd. I'm taking over 20 pills a day now. How can anyone know how all these medications interact with one another? And in the long-term? We don't. We just have to keep our faith in that my doctors...all 17 of them...are all on the same page. Shouldn't be too hard, right? Nah. Next, I'll start doing differential equations just to change things up a bit. Till that happens, I'm officially counting my big-ass pill box as added square footage onto my house's value. Seriously. The thing should have its own zip code and fire department. Later taters.
Anyone ever see the movie Dragonheart? The one with Dennis Quaid? Pretty solid movie, really. I'll get to why I'm asking in a moment The movie is about a young king who was stabbed in the heart as a young man. In order to save his life, a noble dragon played by Sean Connery, gives the young king half of his heart so that he would live. Over the years, the young king grew into a vicious tyrant. Blaming the dragon for the king's turn to evil, Quaid's character, Bowen, vows to rid the world of dragons by slaying every one he encounters. I'll get back to why I mentioned this later. I promise.
In early September, I started having more breathing issues. Around 2-3am, I would wake up from a sound sleep, unable to catch my breath. As long as I sat up, I could catch my breath and all would be fine again. This went on and off for a week or so when I decided to involve my doctors. After a few days of testing, an echo-cardiogram revealed heart failure. Don't worry...I'm just fine...wouldn't be making you read a blog post if I wasn't...but it was a heavy concern for us. For someone who's only 36, how does this happen? And the answer is...we don't know. And may never know. Our primary suspects are radiation and chemotherapy. We've read that just those 2 things combined can a have a delayed effect on certain people. Specifically, their hearts. Unfortunately, there's just not enough history or data to back this up. But that's my doctor's theory.
So, what did we do? And that answer was easy, at least coming from my doctors: we'll just add more drugs to the regimen. Awesome. They put me on a few low blood pressure drugs, a diuretic, and aspirin. They also put me on a low sodium diet, limited to 1500mg of sodium per day. Talk about rough for a guy who's always eating because of my steroids anyway. It hasn't been easy, but my breathing at night has been much better and I'm returning to normal. Whatever that is. I'm constantly redefining what's normal anymore.
I'm grateful to have survived an awful disease. I'm grateful for the care that has been given to me. But there are days when I feel very much like Bowen. In that, certain things have happened, that I can't change, and I need to place that anger and blame somewhere; That the world and my doctors are fumbling for solutions because my situation is unique compared to some; That I feel like a guinea pig for them to poke and experiment on. And I can't seem to catch a break sometimes with these drug additions. Good gawd. I'm taking over 20 pills a day now. How can anyone know how all these medications interact with one another? And in the long-term? We don't. We just have to keep our faith in that my doctors...all 17 of them...are all on the same page. Shouldn't be too hard, right? Nah. Next, I'll start doing differential equations just to change things up a bit. Till that happens, I'm officially counting my big-ass pill box as added square footage onto my house's value. Seriously. The thing should have its own zip code and fire department. Later taters.
